- Posted September 16, 2013 by
This iReport is part of an assignment:
The written word: Your personal essays
My Child's Future with Diabetes
I have perfected my skills of tip toeing into his room, flashlight in mouth, able to check his blood sugar without waking him.
I have perfected other skills as well. I have a carbohydrate database in my brain that I have built over the past two and a half years. I can eyeball a plate of food and quickly give my son the number of carbs for him to enter into his insulin pump.
I have perfected our travel checklist. The arrangements start about four weeks before a trip. Gathering hard copies of prescriptions, and filling out paperwork for a backup insulin pump, just in case. Picking up a letter from the doctor explaining the insulin pump cannot go through an airport x-ray machine (although I’ll never get used to watching my son being patted down, legs spread by the TSA). We have a separate small suitcase that can hold enough low sugar and medical supplies to last the trip and allow for every “what-if” scenario.
For every “normal” aspect of childhood, there is a diabetic aspect that needs considered, planned, and executed. Sports, sleepovers, field trips, scout campouts, new teachers, substitute teachers, holiday celebrations. The list seems endless.
Sleep deprived, exhausted, and sometimes overwhelmed, these daily challenges are not what leaves me feeling defeated. The thought that can manage to bring me to tears is the realization that one day, the weight of all this responsibility will fall on the shoulders of my little boy. Sure, he will not be a little boy when he is the one taking care of his illness, but that offers little comfort. Will the diabetes that stole parts of his childhood continue to rob him as an adult?
I have logged hour after frustrating hour on the phone with the pharmacy and insurance company trying to get him the supplies he needs. I have struggled to balance my full time work schedule with doctor appointments, blood work, and rushing to his school to troubleshoot his insulin pump. I have zeroed in on which type of food, drink, and insulin combination he needs for various sports to make sure his blood sugar stays stable.
I try to educate the uninformed strangers who mistakenly say “if you would just feed him different food, he would not have diabetes.” All while juggling the “normal” demands of motherhood and life and exhausted from middle of the night blood sugar checks. Someday, these will be his fights.
I prepare him as best I can. I allow him to have moments when he is allowed to say that diabetes sucks sometimes; because it does. The first time was about six months after he was diagnosed. He was six. From the backseat of the car he quietly said “mom, diabetes makes me sad sometimes.”
My first instinct was to try and talk him out of it. I wanted to try and convince him that it was OK. But sometimes it isn’t. Hadn’t I cried myself to sleep the day he was diagnosed? There was also that day the summer after his diagnosis that I broke down in tears of the freezer section of the grocery store trying to find a popsicle that wouldn’t spike his blood sugar so he wouldn’t feel left out at his day camp.
I never have these breakdowns in front of him, but he has the right to have these moments too. I try to teach him to see the positive. I put a smile on and say, “Hey, nobody else in class gets to eat a snack whenever they want!” He responds “That’s true, and I get to go to diabetes camp and that is really fun!”
I try to give him perspective. That no matter who you are, you will have struggles in your life. For some people it is chronic illness. For others it is the loss of a parent, financial struggles, or abuse. I teach him that it is not our struggles that define us. It’s how we treat other people and how we live our lives in spite of our struggles that reveal who we really are.
I try to teach him compassion. That even when we are feeling low, there are people who are lower, and we should help them. He mentions a boy in his class with a peanut allergy who felt left out of a birthday treat. He said maybe he could offer him some Skittles that he keeps in his desk for low blood sugars next time so he can be included.
He is very knowledgeable about Type 1 diabetes. Diagnosed at the age of 5, and a very independent child already, he wanted to do things himself. He wanted to know the why’s, how’s, and when’s of all his pricks and pokes. He learned the number of carbohydrates in many foods and which foods he should avoid. I have confidence in his abilities to treat his diabetes during his life, I just want to give him the ability to cope with the illness as well.
We talk about the future. We talk about how 100 years ago, there was no insulin to treat diabetes, and how far insulin pump technology has come in the past 20 years. We talk about what the next 20 years may hold and the future after that. I tell him that no matter how many blood sugar test strips are used in a day, our blessings will always outnumber them.